Like Words Together Reflections from the deep end of Practice.

12Apr/200

Thirty Days

Today I've been actively practicing isolation and physical distancing with CK at home for 30 days. I miss my routine. It is Easter, I'd likely have made the effort to go to church.

Apparently Day 30 is the day when the boiling rage I felt last night condenses into a terrible case of the mopes. All the fear and anger about COVID19 meeting head-on with 7 year-old grief and unresolved feelings of being a bad friend plus a generous helping of rage towards my Mother and family of origin.

It made for an uncomfortable morning where it felt like everything set tears to falling. I ended up drinking tea and playing video games for a while before tackling some chores.

While I'm not feeling simmering rage or weepy mopes, I do feel worn out by the mix of feelings over the past few days. Despite the angry kitty letting me sleep in until nearly 9am, I feel as though I didn't get any extra rest at all. The heightened hypervigilance that's part of the energy of COVID19 for me, is really exhausting.

There is still a double-whammy effect whenever IK's death anniversary comes up. I get the grief, shame, hopelessness, and anger I felt at that time. Along with it comes up the anger, shock, disgust, and despair I felt at my Mother's response to the effort we put in to arranging the memorial service (CK), packing up his apartment (me), contacting his family (both of us). She was jealous of the energy and love we were giving our friend who had just committed suicide.

Up until IK's death my Mother had been the center of attention. When we got the news, we jumped into action with a few other close friends to do the work that needed doing. My Mother pestered me on multiple occasions, asking why we, I, had to help. Why wasn't IK's family doing the things we were. Once we found IK's parents, why didn't we just step back and let family take care of everything. Family should be cleaning up the apartment. Family do the memorial service, why are you, just friends doing this?

I was, in the midst of the shock and terrible grief for our friend, horrified and ashamed of my Mother's petty, selfish behavior. It felt like everything we'd worked on to help her, to improve her health, and build a life around taking care of her unraveled at this point. She realized that our attention could be diverted away from her, she took every little dissatisfaction and she blew them up, she began really bullying me again.

Given that I was already processing a great deal of anger at my Mother for terrorizing me so throughly as a very young child that I never questioned her as an adult, this year it has all hit me extra hard. Last night I was so angry at her and the political nightmare our country has become that I could even make art. Today at least was better and I could make something!

Palest pink brushes
The edges of white flowers.
Apples begin here.

11Apr/200

Angry

Despite teaching a class for several grateful students this morning, with a lovey cat, and having a good conversation with a friend, I’m ending the evening feeling utterly irritable.

‪Everything rubs raw.‬
‪Irritation arises.‬
There is anger here.‬

“Why?!” I started to think, “There’s no good reason to feel this cloud of rage!”

Then I looked at the death toll for today. There’s every reason.

I realized during my last therapy session that not only do I find anger frightening when others express it, I see my own anger as something so dangerous that I can’t let it out around anyone else. My anger can potentially cause harm to come to me if it is seen.

I’ll be unpacking this for a while. I knew how I felt anger anger in general. I tend to be conflict adverse because visible anger from my Mother signaled danger. I didn’t realize I viewed my own anger as so potentially dangerous.

The 9th Grave Precept is not not give rise to anger. Working with that helped me understand that getting angry is a normal emotion, it’s how and what we do with it that’s key. Moreover, anger can energize us to act, hold strong, or change.

Mostly though it’s a sign to rest.

3Mar/200

Becoming Light

I’m grateful for therapy. I may often feel angry at what has put me in a comfy seat, but I’m so grateful to have this kind person helping me integrate painful truths.

I have so often felt broken by the experiences I’ve survived. This new round in trauma therapy is helping me feel like I’m really uncovering the hidden weights holding me back.

Despite the ugliness, the hair-crackling rage I’m feeling on the process,  “I feel myself turning into something of inexplicable value.”, to quote Mary Oliver.

1Mar/200

Return

I’ve been away healing, growing, but have been considering that some writing best belongs here, but on social media alone.

Thursday would have been my Mother’s 77th birthday. I’m remembering how we were getting ready to take her to Hawaii for her 70th. Social media tells me I was ordering our cab to the airport about this time 7 years ago.

Yesterday I reminded my wife, “The forecast said there’s a high chance of Mom-Mopes.”

These post-death birthdays get easier, but I’m in the midst of processing a trauma memory that’s opened my eyes to the physical abuse she visited upon me as a very small child. I’m integrating how terrifying she was and how I have been shaped by this.

Glad I have therapy on Tuesday, it feels right to keep working through the memory. I'm prepared with my self care plan for the rest of the week. Physical Therapy on Wednesday. Donuts with a friend on Thursday itself. Time in a floatation tank Friday. Making art with friends on Saturday.

I’m also enjoying watching my orchid from grocery outlet store, never have seen the flowers, bloom!

15Jun/160

Bittersweet Anniversary

Yesterday marked two years since CK and I have been legally wed. This year marks our sixth wedding anniversary, the traditional gifts being candy or iron to signify either sweetness or strength.

Today she's on her way to the Allied Media Conference. Our ability to end up traveling on or around anniversaries has been a constant theme since the first one. The exact dates themselves being less important than our joy in the passing of each year together.

We're living a pretty different life then when we began our married life together. Both of us are now running our own businesses, I'm not even working in tech any longer. We've moved to the far southwest hills of Portland, firmly in the suburbs and enjoying it. We garden even more now, we've adopted two dogs, and we've survived a whole lot of strife.

While this should feel like our season of celebration, this time between the anniversary of our right to legal marriage and the anniversary of our joining our lives together in public ceremony, it feels hard to really celebrate after Sunday's mass shooting at the Pulse nightclub in Orlando, Florida. The largest mass shooting in United States history, but only the latest incident of violence against the LGBTQ+ community.

The Persian poet Jalāl ad-Dīn Muhammad Rūmī wrote, "Is weeping speech?"

13435416_1080994608642715_1523324555138209565_n

Imagine that every encounter you have with a new person is guarded. Do I talk openly about having a spouse, which could be kept "neutral"? When the new person inevitably refers to my "spouse" as my husband, do I feel safe correcting that person or do I let it slide because I don't have the time or energy to open myself up to possible confrontation? While recently flying with CK the airline staff at the check-in counter checked me in and referred to CK as, "Mr. K.", making both assumptions about gender, perhaps just not fully paying attention. Given the tension and stress in airports, was it worth our time and the potential for greater consequences to correct that person about gender, calling out that we're queer? Am I going to lose students if they find out my spouse is a "wife", not a "husband"?

We're lucky, far luckier than many. We live in a pretty liberal city, we're not the only queer people in our neighborhood, we're white, and we have a lot of access to things that make life easier. CK's family loves and accepts us fully. We have a multitude of friends who believe in us and love us. That said, we're grateful for two dogs that bark a lot in addition to a security system.

Imagine that every single day you wake up to the knowledge that there are not only countries in the world where you could be killed for loving who you love, but that there parts of the country you don't feel entirely safe traveling. When CK and I travel, within the country we are both citizens of, we often carry copies of a durable power of attorney for each of us, just to ensure that we would be able to help the other in the event of a medical crises. Imagine making that part of your pre-travel check-list.

Imagine that every single day you walk against a society where people think it is a bigger tragedy that more people like you weren't killed. You might say that this is just one, isolated, extremist preacher, but I have absolutely no doubt that there are people who share his opinion.

That's every day if you're queer. Maybe that's all you've got to carry. You are white and male. You felt accepted, valued, and loved by your family. You had friends and fit in at school. You went to college, graduated, found a satisfying career, found joy in the love of another person....

Stop there. because once you start expressing that your love for another person does not fit within the norms of society you stop feeling valued and accepted. Yes, maybe your friends, family, and boss accept you, value you, but you spend every day knowing that a significant part of society condemns you over who you love. That's the best case scenario if you live in a country that doesn't outlaw your very existence.

Just try to imagine that as the best case scenario. Most people don't have it that way. They don't experience an easy time at school, they struggle to try and fit in, they're not male or white, and they lacked the kind of resources that made getting an education and higher paying career possible.

Now imagine you grew up in a family that derided you, abused you physically, made fun of you, called you names, perpetuated verbal sexual abuse that filled you with shame and self-loathing, made you question yourself constantly, and left you feeling worthless. Imagine that every day you make your way forward, working for good in the world, fighting against the ingrained belief that you are a failure, a disappointment.

That kind of family of origin and the daily weight of homophobia is my everyday experience. I'm a queer woman from a toxic family. My Mother went to her deathbed telling people sadly about my "lifestyle" and making sure I knew that I owed her everything since I was lucky she didn't "get rid of" me.

Today I spent 15 minutes weeping in my van in a parking garage in downtown Portland. Struck with overwhelming feelings of failure, worthlessness, and self-loathing and trying to take in a beautiful email from my teacher telling me how much pride she has in work I've done. Some days are like that. The Buddha's last instruction* was to make a light of ourselves, to shine so that others might also find a way to liberate themselves from suffering.

Some days it is hard to be a light in a dark world.

A friend of mine posted the following (added emphasis is mine) and I think it sums up how I'm feeling today.

I'm so tired. Thank you to the allies who are raising the hard conversations ... I don't have the heart for it right now. I see you challenging friends, family, the media, and it matters to see your support. Please find a way to sustain that passion. Thank you to the few people who are gun owners who have said you don't need an automatic weapon to hunt or protect your families. You're right, but I do not have it right now to fight that fight. And thank you to the people who care enough to say, "are you okay?" Keep saying that - not just to me, of course, but for our collective healing, our humanity. It's not okay that we have to watch this turmoil, it's not okay that many of us have faced threats, exclusion, and judgment - for years and years, not just because of this. This event rips the scabs off of our hearts, to be sure - but this is bigger than that. Are we okay? Start asking that. We are not. Collectively, humanity really needs a reality check. Get the fuck over yourselves and be part of the solution. Don't pray for me, stand next to me. Don't insulate yourself, be uncomfortable with difference. Don't allow politicians to fuel divisive hate - all for personal gain ... check them. Tell them it's not okay. There are plenty of opportunities, find them. But most of all, don't forget these moments of horror and be comfortable again next week.

Please. Don't get comfortable. Don't go numb.

Speak up, stand up, walk beside us. Don't forget this with the next excitement that comes in the news cycle.

 

*The Buddha’s Last Instruction
by Mary Oliver

“Make of yourself a light,”
said the Buddha,
before he died.
I think of this every morning
as the east begins
to tear off its many clouds
of darkness, to send up the first
signal — a white fan
streaked with pink and violet,
even green.
An old man, he lay down
between two sala trees,
and he might have said anything,
knowing it was his final hour.
The light burns upward,
it thickens and settles over the fields.
Around him, the villagers gathered
and stretched forward to listen.
Even before the sun itself
hangs, disattached, in the blue air,
I am touched everywhere
by its ocean of yellow waves.
No doubt he thought of everything
that had happened in his difficult life.
And then I feel the sun itself
as it blazes over the hills,
like a million flowers on fire —
clearly I’m not needed,
yet I feel myself turning
into something of inexplicable value.
Slowly, beneath the branches,
he raised his head.
He looked into the faces of that frightened crowd.

7Dec/150

R.I.P. Mom

My Mother died on November 24, 2015.

I was informed via an email from her old pastor on December 1st. It arrived between my teaching two yoga classes.

I usually don't look at email between classes, but CK and I had left dinner plans up in the air and there was the possibility she was going to put in an online order for me to pick up after teaching. So I looked. The subject preview was sufficient for me to have received the news, even before reading the whole of the email.

I spent much of the rest of the week just stunned, feeling unable to take in the news. A morning spent angry with the facility she was in, since I had let them know that when her conditioned worsened to let me know. Then I thought about it a lot and wondered if it was intentional, that the facility had been told not to tell me.

Yesterday I checked back in with the pastor, asking when he'd found out. That perhaps there was some delay due to the holiday? However, the reply that came back confirmed my worst suspicion; that my Mother had demanded that I not be informed.

The family friends that had taken over care decisions for my Mother informed him the day she died and included a stern reminder that he abide by her wishes to not tell me. He told me that he talked about it a lot with his wife and prayed even more on it, and then finally decided that it was the greater sin for me to be kept in the dark and emailed me. I've since inquired further and he confirmed that my Mother had made the decision to cut me out of everything several months ago.

I'm not sure which is worse, thinking that people forgot to tell me or knowing that my Mother intentionally left me out of the loop.

The last contact I've had with my Mother was the vicious letter she sent me right before my birthday.

In reviewing the letter, which caused CK to exclaim out loud and go a little pale when she first read it, my therapist and I talked a lot about it. I said back in August that I thought it was another effort to get me to fall back in line and go apologize for ever wanting to live my own life, free from abuse. Instead it only strengthened my resolve to not talk with her.

Now the consequences have been made abundantly clear. If there was ever a human who could figure out how to use their own death to strike out at someone, my Mother was that human.  True to form, she has had the absolute last word about our relationship by leaving a directive that I not be informed of her death.

My Mother was a master of grudges. Her last directive about me speaks volumes to the profound suffering she was going through. For her to foster such bitter animosity toward her own daughter is shocking, but true.

I feel all kinds of shame and fear around her death, this exclusion.

I feel ashamed I'm related to someone so spiteful and ugly; shame for her behavior. An implicit shame that secretly wonders if I am truly the horrible daughter she's portrayed me as to uphold her wishes, her personal mythology. Fear that as I age I will turn into her. Afraid her behavior is all my fault, just like she taught me everything bad always was.

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25May/150

Stumbling Towards Peace

So much for my National Poetry Month pledge. Ah well.

Red Gerbera Daisy - May 25, 2015 - Portland, Oregon

Creativity, writing or other artistic medium, has been distant this winter into spring. I'm also not really motivated to read much either. I was thinking this morning about the two kinds of shame that arise around this. First out of the gate comes the, "Why are you at your desk working on collage, polymer clay pieces, organizing, bead work, anything!?" That one is so obvious. I should be making an effort to spend time at my desk dedicated to my art. This is the way artists  become selling artists.

The more subtle voice of criticism is softer and hints at some colossal, irredeemable flaw in not wanting to be creative. To be perfectly content in this slow, fugue state and not desire to break out and make art seems like the biggest betrayal, failure of them all.

Which means that some days, still many days, I work a little (3 classes a week, moving up to 5 come June), try to take care of some household errands and/or chores, and nap. I still feel kind of amazed at just how much  I still nap and how an hour of therapy can throw me into a tailspin lasting for days. A particularly intense therapy session earlier this month has seen me back to nearly daily naps, many over 2-3 hours.

What finally occurred to me on the 11th was that I'm angry. I left that therapy session angry, which was a far healthier response than the shame and body disgust I went in with. That said, I'm really at a loss when it comes to anger. A childhood of being disallowed the expression of any "negative emotions", anger, disrespecting elders, "talking smart", anything perceived or labeled as "back talk", etc. As a young child this was enforced through physical action followed by banishing me to my bedroom where I was also not to cry and carry on, lest I be "given something to cry about". As I grew older I would mostly just be banished. Cut off from contact aside from school attendance. The rest of the time I was in my room with the door closed, shutting me away.

What I realized now is that when I'm angry I tend to get in a gray, exhausted, demotiavted funk really quickly. This leads me to just go to bed and nap. I go somewhere quiet and try to wait it out. Which really worked for me growing up, but as an adult.... well it still works because I'm teaching and not working some stressful, full-time+ job in IT. However, I also get that the anger I feel at the abuses I survived is a pretty reasonable response.

And yet... there are my vows, particularly the Ninth Grave Precept which directs us to, "Actualize harmony. Do not be angry."

So I'm trying to find ways that let me acknowledge and reconcile the anger I feel, particularly my "inner, younger selves" that were so utterly denied any way to express anger at what was happening in the present moment. Ways to express the anger that are safe, measured, and do not bring further harm to myself or others. I'm brainstorming some "intuitive art" sessions where I just pick colors, textures, words, and images from my collage materials that the inner anger resonates with and, on the advice of my therapist and CK, I occasionally try yelling and screaming in the car.

8Oct/140

October Observations

October is here, arriving with a burst of rain and then come days of warm, summery days and crisp evenings. Really, one of my favorite times of year in Portland. Leaves are just turning, apples are plentiful, all the moss that had gone brown in the summer heat turns to green again. I'll miss the last two weeks of the month because we'll be leaving the house, and all the beautiful creatures living in it, in the very capable hands of a dear friend while CK and I enjoy a trip.

Kitchen Benefactors

Part of the trip for her will be work, but we have several days for just us. It has only taken two marriage ceremonies for us to have a honeymoon, but we're finally doing it. I'm getting really excited for the adventure of an entirely new place, one I've always wanted to visit. I'm also just happy for us, the last few trips CK and have taken together have been completely overshadowed by the Mama-Drama-Rama the claimed 2012 & 2013. We deserve a nice holiday with no emergencies to deal with at home.W

My talk to MozFest didn't get accepted, which is disappointing, but it is nice to not be worrying about my slides, etc. before giving a talk. I will be attending though, if anyone else is there and wants to look me up.

I've been applying for teaching positions at studios around town. Really, it feels like auditioning, particularly when I give a demo of my teaching. I never thought I'd come to prefer the grueling, multi-person, multi-hour interviews of the tech industry, but the audition thing is so nerve wracking that I'd take the old way back any day! What I've discovered is that there are a lot of teachers in the area and a lot of owners that have a very specific image they're trying to project.

No, I'm still not working in tech. The earliest review of that, a date given grudgingly, would be January 2015. However, the overwhelming opinion is in favor of me not going back to the tech industry at all. I've been noodling over this quite a bit the past few weeks after getting some unexpected news about my last company/team. I spent a good week in blue sky mode, fantasizing about going back so I could prove I could hack it, or make a difference, or finish something.

Then I had a good talk about all these feelings coming up with my therapist and after some discussion I saw that a large part of my desire to return to my last company is out of some hope it will "fix" my feelings about leaving college. It will somehow repair the past if I prove something that doesn't really matter in the present.

That brings me back to healing from the idea that you can spend 17 years building yourself into something and be told that you have to stop. I never thought that would ever happen. Maybe wouldn't have had I not had such a supportive wife and felt that I still had to keep everything moving along, regardless of my own health and the health of my relationships.

I am humbled by the abundance of support I now have in my life. Instead of trying to find a job that just gets me by, that doesn't let me take the time to really heal the hurt and trauma I've survived, I am instead thinking of ideas of how to market my private yoga sessions with people. I'm also on Week 6 of The Artist's Way, and that has been bringing me some profound insight on how I view my health and identifying the ways in which I'm mean to myself; writing things down so I can better work with them. I've also been working through a lot of anger about my Mother, huge amounts; my therapist and PMHNP both say that it is about time for me to feel angry, about a whole lot of things.

All that means I'm also still napping, which I'm trying to be less judgmental about having identified my impatience for my need to rest as a way I'm mean to myself! Some things, like having a 45 minute conversation about what it was like at my job this time last year as part of the process to review my eligibility for unemployment benefits, will leave me feeling worn out for a day or two. I am keeping in mind and trying to celebrate that it is an improvement over a week's fugue-state after challenging tasks like that.

The good news about sticking with the hard work is that it is helping things out; I am getting unemployment benefits now that I've been released to some kind of work and am actively searching. I'm going to be applying for a couple of programs that help you establish your own business, which I'm qualifying for since my physician has advised me not to return to my old career. Teaching classes here and there is going to be hectic and costly in regards to time spent commuting and fuel. CK has been brainstorming ideas for me to set up a solo teaching practice, with a class or workshop at a studio here and there.

I've also just started an Etsy shop. It isn't "open" yet because I need to face down my block over photographing artwork to post. In addition to pieces listed, I'll also be taking custom work. This winter I experienced a huge shift it what I was creating and am really excited by the direction I'm heading it, but I've avoiding photography for some fear of failure.

I'm planning to take an introduction to matting and framing artwork class at the Multnomah Arts Center next month. I plan to use at least one of my own pieces of artwork since I have so many questions on how to mat them. I know it will get me over the fear of using the mat cutter I bought a few months ago!

Since I've been doing so much with making art, I've started a new blog, ZenZada. We're also going to include stories about our life (mostly raccoon adventures thus far), reviews of places we stay when we travel, vegan/GF travel tips, and other lifestyle things like that. I started it in part to have a place to write about my co-creative art project with a Portland artist.

Vegan Nosh continues to move along, I've been doing a series of experiments with vegan burger recipes and posting about them. Since we found out CK cannot have gluten, I've been doing more experimenting and cooking at home, which is really better for us in so many ways.

28Sep/1310

A Year with Mom

CK Teaching Mom to Use iPad - November 2012 - Portland, Oregon

**Trigger Warning: Lots and lots of Mom Stuff, Abusive behavior, references to childhood abuse and dealing with addiction issues**

It has been a year since we moved into our new home, 11 months since Mom moved in with us. It has been quite a year.

Honestly, I have found it hard to write about anything. This year has been facing the reality that I am unable to affect my Mom's happiness, no matter how hard I try.

It has also taken away my last hopes that maybe my childhood wasn't awful. That it only had moments of lousiness. That my Mom was pretty good the majority of the time.

Those last hopes are pretty much gone having seen how quickly CK has seen Mom's manipulative tendencies. How swiftly she's become horrified by and angry at Mom's behavior. It is deeply painful to really acknowledge the truth of one of my therapists observing that she felt my entire childhood was devoid of any adult who had my best interests at heart.

All I've wanted for Mom is to see her content, happy even if just in small ways. I gave up on seeing Mom have a life that's fulfilling a long time ago after realizing that I don't think I could recognize what that means to Mom. I also recognized a long time ago that what I find fulfilling, my Mother finds either amusing or baffling, which also hurts.

We hoped that by bringing Mom to live with us we could help relieve some of things she was clearly overwhelmed by. Living alone she fell several times, kept getting sick, and was clearly not coping with anything. I was going out to Gresham all the time, sometimes in a panicked rush. We knew that with some oversight with medication and meals, and some company, that she would stabilize. I'd hoped that with stability we might have the space to enjoy some of our time together.

The first weekend after she moved in we had a low blood sugar incident because Mom had taken insulin and didn't follow up with food. We were out running errands and not here to supervise. When we arrived home Mom was barely responsive, clammy, and incoherent.

By "incident" I mean a fire truck out front, 6 or 7 very large, male EMTs in our cramped living room that had just been filled with Mom's stuff, and an ambulance ride. It was the second time in my life I've been asked to "ride shotgun" in an ambulance with someone I know being stabilized in the back. I gave directions to the hospital, the ER doc went over her list of medications in shock. After returning home from the hospital we also took over Mom's medications, particularly things like Oxycodone and Ativan, which we caught her about to incorrectly dose herself.

It hit us really hard that the terrifying mix of Ambien, Ativan, Oxycode, and Fentanyl patches she was on left her in kind of a vague haze all the time. If you add to the the insulin, forgetting to eat, and not eating well we knew it was really no wonder she hadn't fallen more. A combination of over-medicating herself and low blood sugars could have very easily been lethal.

Since this incident all her diabetes medications and insulin levels have been adjusted and we most often check into be sure she's eaten after insulin. CK spent several months having weekly calls with a diabetes nurse specialist at Kaiser to track Mom's blood glucose, get Mom off the Metformin, figure out what the new R and N insulin doses should be, and what the best scale for corrective R insulin needs to be. We make sure Mom checks her blood glucose 4 times a day, correcting the insulin dose 2-3 times each day.

Every other week for the past year and a half or so I set up her meds for the next two weeks. We've also realized that she still doesn't do well getting them out of the containers, often leaving pills behind, and occasionally taking the pills incorrectly (wrong days, wrong time to take them, etc.). Since last autumn every morning we set out a day's pills in small ceramic ramekins, each resting on a colored sticky note to indicate which time it is to be taken.

I now also dispense her Fentanyl patches, which she also hadn't been taking correctly. I've got her to stop taking Ativan too and work with her in stressful situations to try and focus on her breath, reminding her that she's alright. Besides which, her last physician had prescribed it only because of the traumatic way her late husband's family dumped her at the independent living facility in January 2012. Mom isn't having panic attacks anymore, so it doesn't make sense for her to keep taking Ativan on a daily basis. At times she was taking one a few times a day in combination with Oxycodone 1-2 at a time, "as needed". Yes, that is on top of 100mg Fentanyl patches and her taking Ambien at bedtime.

We've stopped the Ambien too, particularly since she already is taking an Oxycodone at bedtime too. When she was taking those Ambien and Oxycodone at bedtime she would become alarmingly out-of-it. No surprise.

Then there's the kidney disease. After years of diabetes, and not really doing a good job managing it, with the related medications like Metformin has left Mom's kidneys is sorry shape. The result is a constant struggle with anemia since her kidneys fail to adequately do their part of the job of red blood cell production. This means bi-weekly blood work to see how her blood levels are. When they're falling, there is the scheduling for a type & cross-match followed by a transfusion, sometimes needed monthly. She had an access port installed several years ago, but to ensure that it always properly working in case a transfusion is needed we also have to have bi-weekly port flushes scheduled. Since we've engaged the help of the care management folks at least the work of taking Mom to a Kaiser facility weekly is offloaded from us, but still we're always reviewing the lab results. We also weekly dispense a dose of Procrit which stimulates the kidneys into working and have regular calls with the nephrology pharmacy as the dosage needs to change to try and keep ahead of the anemia.

It hasn't been easy getting Mom's health to stabilize, but we've done it. There have been no more serious falls and no more low blood sugar incidents. On top of that the change to a vegan diet* and stabilization of her blood glucose levels has meant that her eyes** are actually improving, her near constant digestive distress has been resolved, and her triglycerides have lowered to the point they can actually be measured.***

*Mostly vegan, we encourage her to eat as she likes outside the home.

**Mom is legally blind due to complications of the diabetes. Her eyes have had a lot of swelling in them, necessitating treatments directly too them. Her eye doctor was actually quite pleasantly surprised at our last visit and felt that the diet change and blood sugar stabilization is clearly helping. He told Mom that she should keep doing what she's been doing!

***Yes, Mom's triglycerides have been so high they've been out of measurable range.

We've worked with a new physician on what her dose of Oxycodone is, but Mom often complains about wanting to go back to when she was self-dosing with these. The amount we can get from the pharmacy is very strictly controlled and we're not allowed to pick them up early. On more than one occasion we've come up short of the date, which leaves me suspecting that she can actually get into them on the high shelf I've put them. In fact, I've moved them this week because I really think some of those prescriptions have been "short" because she's got into them.

There's been some good, but mostly it has just been a damn long couple of years we're coming up on. That said, it has been a particularly lousy week.

Sunday, when CK and I were going to leave to go take care of the week's grocery shopping Mom somewhat snidely remarked that she hoped we had fun without her.

Mom's been resentful for a while that grocery shopping isn't set aside as a fun outing for her to poke around the store. Getting the grocery shopping is largely a chore I like to get done with as efficiently as possible and I realized early on that shopping with her took at least twice as long. I also had to stop her from nearly running into people with the shopping cart she insists on using. Grocery shopping with Mom makes a tolerable chore an anxiety inducing activity.

On Monday I had to admit I was fighting a cold. Watching CK play Skyrim after dinner started making horribly dizzy so I went to lay down. While I was doing so I could overhear Mom, through her closed door, on the phone with a friend complaining about us, particularly about how "of course" we didn't take her with us shopping along with other bitterness.

This is not the first time one of us has overheard Mom bitching about us on the phone. CK even confronted Mom once after overhearing her telling a friend that I was misusing her funds. What shocked CK most about this is my lack of surprise that Mom should get caught saying awful things about me to people behind my back. She's done it many times in my life, at various ages.

On Tuesday Mom's blood glucose at dinner was unexpectedly high, particularly since she'd had lunch earlier than usual that day. It was high enough that I'd asked her what she had for lunch and asked if she'd had a snack in the afternoon. A snack would have been fine, I just wanted the 220 blood glucose to make some sense. I had her retest, assuming she had something on her hands, but it was still at 200. I just shook my head over it and gave her a higher dose of the R insulin to take before dinner. We've suspected Mom's been snacking in her room because she's been overheard munching at times and we've also caught Dora licking up crumbs off the floor. We've asked her about it, but she always denies it. sometimes really defensively.

On Thursday morning CK realized that our recycling and compost cans didn't make it down to the curb and rush out in the morning to do so. She discovered Mom had accidentally dumped the small trash can from her bedroom into the recycling. This has happened a couple of times. We've labeled the cans with big reflective letter stickers, we've suggested she not take it out when it is dim outside (which makes it even harder for her to see which can is which), and we've even noted that her trash is emptied every other week by the person who comes and cleans the house for us. Still, it is one of those things where she still wants to feel like she can do something herself, so sometimes we end up with trash in the compost and recycling, leaving whoever finds it the messy job of getting the trash out of the wrong bin and into the right one.

That's not the bad part. Yes, it is frustrating and irritating, but if that's the only irritation we dealt with it would be entirely manageable.

In the trash CK discovered several Twinkie wrappers and a receipt from buying some herbal weight loss pills while out shopping with friends when we visited Toronto for our anniversary. Take away that Twinkies aren't vegan. Take away that she's self medicating with weight loss pills that, combined with all the medications for her diabetes, high blood pressure, and congestive heart failure, not to mention her pacemaker, are really a dangerous combination. Not to mention just being a bad idea to take them with Mom's combination of health challenges. Take all that away and we're left with her sneaking things that are not good for her and lying about it.

CK confronted her while I finished getting dressed. I had to take several deep breaths to go out into the kitchen where I could hear Mom implying that her hiding things was our fault. That she is forced to lie and sneak because we so rigid, don't let her have anything she wants, and "treat her like a child". I confronted her about the high blood glucose on Tuesday evening, noting that Twinkies explained it now. I told her I wouldn't have cared if she'd had a sugary treat, even if it isn't the right kind of choice for herself. I had just wanted to understand because unexplained highs or lows in the blood sugar can be indicative of something going on that should be seen to by her doctor.

Since Thursday morning Mom's barely spoken to us****. She is polite, but doesn't really engage and retreats to her room. I haven't given in to the old training that compels me to make it better for her, comfort her. CK is also not really talking to her at all after telling Mom she needed to really honestly talk to us. Right before Mom told CK that she's not a psychologist and she can't make Mom say anything.

Mom Watching the Sunset - March 2013 - Kealakekua Bay, Hawaii

This past spring we had an assessment of Mom done by a company in town that provides care coordination and management for seniors and other vulnerable people. They advised that Mom shouldn't be living with us, that the level of oversight and assistance she needs would require us bringing in a lot of extra help in the home. I've also been questioned pretty repeatedly by both of my therapists this past year about what I get out of having Mom live here, aside from the reassurance that direct oversight of her provides.

Mom's not happy here. My therapists believe Mom really isn't capable of happiness, that she connects with others only through misery. Lately I think the main things she gets out of being here is an increase in her monthly income, because she's not spending as much for her "rent", and access to a hot tub. I've felt for several years that while Mom says she loves me, she doesn't like me. She doesn't respect me, doesn't understand me, and feels entitled to demand respect from me.

Mom has this idea that merely attaining a certain age entitles someone to be respected regardless of how they behave. Growing up I was repeatedly told that age demanded respect, regardless of truth or what was ethically right. Mom also raised me to respond to her unhappiness, to do anything to make her happy and to make things easier for her.

Add to a huge, lifelong list of behavior and mental health issues the fact that the clear toll of the past couple of traumatic years is a decline in cognitive ability. Add to that the reality that Mom can go from generally OK to totally decompensated very quickly. This progression is so rapid that it is not advisable for her to take public transportation, not even the ride share for seniors. She does take a shuttle to the senior center, but those drivers have more experience dealing with folks like Mom.

The assessment folks were right. CK and I are so overwhelmed with the effort to care for her that that effort combined with our respective, demanding jobs, means we often have little energy left to connect with one another. It has become increasingly clear that Mom does not, cannot appreciate the tremendous effort it takes to keep her health stable. In fact, I often am left feeling like she resents our efforts to keep her health stabilized because she doesn't want to think about what she eats, she doesn't want to keep a consistent schedule around eating, she wants to take all the pills that let her put this world she hates and the pain she fears behind a haze of fog.

The reality is that Mom will be unhappy, petty, and spiteful no matter where she lives. She will continue to decline mentally, further removing any hope that she can honestly engage with us about the hurtful ways she behaves. Not that she ever really has taken responsibility for her behavior.

On Tuesday afternoon we met with a woman who specializes in placing people in care facilities. She was recommended to us by the people who did the care assessment. Her belief, given Mom's cognitive state and mental health issues, is that Mom needs a residential care facility. She is encouraging us, me particularly, to understand that it is OK to pursue this decision about Mom's long term care, that it isn't reasonable for us to sacrifice our life together just so Mom can be terrible to us, me particularly. No sacrifice on our part can actually bring Mom happiness in any way, but will only further harm us.

****As of 11pm we've had a huge blow up, but I suppose at least it isn't festering just below the surface any longer.

8Oct/124

Hostile Environment

My wife has had her life threatened on the internet. (trigger warning on that link)

Yes, really. It happened Friday, while she was away at Grace Hopper.

I haven't really said much about it yet because it has upset me so much. Perhaps more so because I was alone, on the opposite coast, and feeling especially helpless. However, she's been home for a day now and I'm still really very upset over it.

This has been a hell of a year for CK at her new job. She's tried to exceed expectations despite all the stuff happening with my Mom, not to mention the stress that has put on me, making me less available to help her out. She's succeeded too despite a hostile work environment.

I want to call attention to the hostile work environment expressly. This death threat starts back in March with CK logging into work and as part of her everyday job activities, coming across a blog post from a community member, a contract employee* at her company, asking for support to keep "traditional marriage" safe from people like us.

To restate, in case anyone missed it: CK started a day at her job by viewing, on a web site hosted by her company, which is part of her job to keep current on, a post stating that very nature of our desire for marriage equality makes us a threat to this man's way of life and expression of his faith.

Her company didn't act on this in a timely fashion and didn't already have in place a code of conduct for community members. Clearly time was being given to think through the response the company would make, but there was a very long stretch without updates from leadership. CK drew attention to her company's lack of response to her having to face a hostile work environment on her blog, following up a post she'd written about the start of the situation.

Bringing attention to this lack of action garnered a threatening comment from another co-worker letting her know that she and another queer co-worker weren't welcome at the company.

Her company eventually responded, again taking rather a long time, and the person has been reprimanded, but without being revealed publicly. I've seen the person's apology email and I feel the person spent far too much time excusing threatening behavior than actually owning the gravity of their actions and making amends for it.

In response to the whole situation CK wrote a post about the importance of accountability in communities and for this post she's received a death threat via the comments to her blog.

I really don't have a lot to contribute other than to draw attention to the fact that my wife has had to face a hostile work environment. Because she's refused to ignore it and because she's taken steps to document the broken community and processes at her company she's had her life threatened.

Think about my wife, and think about the rights we're denied because we're queer. Think about the violence we're threatened with if we speak out.

Next time you say that the open source community is free of sexism** and homophobia, is filled with people of such good standing there's no need for codes of conduct, and that fostering a culture based upon respect is unnecessary because everyone is just so awesome and smart... take a moment reflect upon the fact my wife, a recognized leader in the open source community, has received a death threat for refusing to just keep quiet over the hostile environment in her workplace, an open source company.

 

*This man has actually been made a full-time employee since this all started.

**Not to mention a whole lot of other -isms against other under-represented minorities.